Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners · 2025
Caring for Girls With Salt-Wasting Congenital Adrenal Hyperplasia: A Qualitative Study From Central Java, Indonesia.
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Sari Joni Indah, Pramudani Ardita Hartanti, Ediati Annastasia, Utari Agustini
Аннотация
INTRODUCTION: Congenital adrenal hyperplasia (CAH) imposes significant lifelong challenges, yet existing policies and the implementation of healthcare systems in Indonesia have not fully addressed the needs of affected families.
METHODOLOGY: This qualitative descriptive phenomenology study employed Braun and Clarke's inductive thematic analysis to explore the main challenges faced by 13 parents of female children aged 0-18 years old with salt-wasting CAH in Central Java, Indonesia. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).
RESULTS: Four major challenges reported by the parents were: financial burdens, public stigma, limited genetic literacy, and concerns regarding children's mental health.
DISCUSSION: Drawing on parental testimonies, we propose policy and practical recommendations to improve CAH care, particularly within Indonesia's healthcare context.
METHODOLOGY: This qualitative descriptive phenomenology study employed Braun and Clarke's inductive thematic analysis to explore the main challenges faced by 13 parents of female children aged 0-18 years old with salt-wasting CAH in Central Java, Indonesia. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).
RESULTS: Four major challenges reported by the parents were: financial burdens, public stigma, limited genetic literacy, and concerns regarding children's mental health.
DISCUSSION: Drawing on parental testimonies, we propose policy and practical recommendations to improve CAH care, particularly within Indonesia's healthcare context.